6 Replies

I know you probably don't want to hear it, but it might be an idea to go back to 13mg if you were ok at that dose especially if you are travelling next week. Also would suggest stay at that level until after Xmas/New Year, always a bit stressful. Get things settled, and then try again.

Your low markers are most probably due to the Pred.

You can always take paracetamol for low level aches and pains that may not be PMR. Trouble when we have PMR or GCA we assume all pains are down to that, and sometimes they aren't!

Your advice is just what I needed thanks and I will go on to 13mg for a month at least.The problem is a busy day next week from early morning to late night but I have to take a family member to a consultant appointment. I will take a pillow to rest my neck and maybe paracetemol to get through it the long day.

Cassie, although it sounds as though you managed to reduce successfully from your 15mg starting dose to 13.5mg, it sounds as though you may not have remained on 13.5 for sufficient time to keep the pain under control. Although the latest blood test shows such improved markers, they can sometimes lag behind the symptoms. Also, is it possible that you have been overdoing things, for instance lifting heavy objects/carrying heavy bags which may have aggravated your neck and shoulder? Whatever the cause, as you have a busy day travelling ahead, I echo DL's advice to return to 13 for a while to see if there is any improvement and at least to give you some extra cover for your travels, not to mention the busy Christmas rush!

Is the neck/shoulder pain really PMR or could it be your shoulder/back muscles are very tense and going into spasm? That was what I found made reducing difficult - the pain clinic here dealt with it (having diagnosed myofascial pain syndrome which is often found alongside PMR) with cortisone and muscle relaxant shots into the hard muscles (which actually meant most of my back) as well as manual mobilisation of the trigger points - which are in pairs on either side of the spine in the shoulders, about waist level and in the lower back. Some or all may be affected and it is something that can be done by a physio or sport massage therapist. Before pred and again now, I kept/keep it under control with Bowen therapy - I had to pay for it but I didn't have to find a doctor to do it and it worked for me!